Up until now Josi has made all the Jacobs blog posts with some of my interjection and minor edits, but truly the words and feelings were for the most part hers. I'd like to try and convey some of my thoughts and feelings through this pregnancy and the heartfelt and truly emotional rollercoaster I've faced too. Josi's words are a true joy to read and I so look forward to reading her posts as her sweet personality and heartfelt feelings offer encouragement and warmth to me. It is a tribute to her love and strength as a wife and mother.
I've thought of writing my own post in the past but each time I actually thought about what to write, my mind raced in different directions and emotions welled up to the point of frustration and I gave up. I'm trying to overcome that and share what is on my heart though words cannot convey it seems what I'm truly experiencing and feeling.
Earlier in the pregnancy before we knew anything about Samuel's problems I fed off Josi's happy emotions as I got daily updates on what was happening with her and the baby. I looked forward to her daily reports of how she felt and how she thought the baby was progressing.
Once news from the tests started revealing "potential" issues (week 12's tests), I kept reassuring her (and myself) that everything was going to be fine and I truly thought so. I deal with things differently than Josi does - until I have the information, I don't deal with the whatifs until it's time to do so. Once receiving the news that our son has Trisomy 13 I was simply in shock. This lasted for a while and I have to admit it was hard to be strong for my family; all I wanted to do was crawl into a small hole and stay there and not have to deal with this! How could this have happened to us and our family? Why could this have happened to us and our family? I quickly found out that this occurrence is totally "random" from a medical perspective but I couldn't help but think of "everything happens for a reason". Which means I and my family have to endure this series of experiences. Earlier the medical professionals recommended terminating the pregnancy but our beliefs and our conscious simply would not allow that to happen. I have to admit this isn't easy (but I hate to think of the alternative guilt and repercussions that aborting Samuel would bring) when I take a few moments in my mind to fast forward the next few months it seems that I deal with the grief and likelihood that our son is going to die - just the fact is horrifying and this continues again the next time I play things out in my mind and the grief sets in. In the fast pace of life this catches me a bit by surprise and when it does, it cuts like a knife straight through to my heart and it makes me stop in my tracks. Inside it seems I die a little bit and it happens over and over again. At times I wish the grief could come once already and then be done with, but I realize that is not going to happen and that is not my plight right now and I will stay the course until it's time to do so.
I would consider it a privilege and honor to be able to meet my son Samuel for a first time (as it is and was for my so beloved son Luke) and experience the love and bond only parents can know. To share the event with Josi and Luke would truly be a blessing even if short lived and with sorrow. If this could happen it would be such a blessing if even for a very short while.
If Samuel's time is destined to be short and I cannot meet my son, I will take my refuge in God's reply to Paul in 2 Corinthians 12:9 '... "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.' and the assurance I know Samuel is in a much better place (Matthew 19:1 'v14Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."')
Finally, when I slow down from every day life and reflect upon what matters in this world and consider God's great gift to us: Ultimate Love through his son Jesus and is echoed in many ways (e.g. loved ones, family, spouses). Understanding that love is not a feeling we get to experience that makes us feel good inside but in truth is actually dedication to serve others. To "love someone" means to truly commit to serve them. The joy of serving them generates the wonderful feelings but are "byproducts" we get to experience. This is hard work, but the results are tremendous and incredible and only a glimpse of God's love for us. The world tie us up in the hustle and bustle of getting ahead and personal gain but this promise of self gain is actually self defeating and leaves us empty. I am thankful for the love of my family and extended family and friends. I am so very thankful for my beautiful, compassionate wife. Her strength is a true blessing and inspiration and I'm so very thankful for her and her committment to me and my family. I'm so very thankful for Luke. If we did not have Luke already this experience would seem unbearable. He is a joy and a light to us during these times. I'm also thankful for Samuel. Even though it seems a tragedy for his condition, this is an experience that God has for me to endure. I will be thankful and try to glean what it is I'm supposed to glean from all of this. Most of all I'm thankful for God's promise in that He does not forget his children and takes care of them all.
Tuesday, December 15, 2009
Monday, December 14, 2009
Diet Update + Birth Plan Preparation
Adjusting to the new and healthier diet catered to lowering my blood sugar + testing my blood has not been without its complications last week. Menu planning for the week is now all protein and vegetable focused. This has been so hard for me since I love carbs and sweets (in the evenings). It’s getting easier though. I am finding new recipes and things to keep me sustained without having those uncontrollable urges. I also had some issues with my blood testing last week that caused my numbers to be a lot higher (over 150) than what should be expected with my condition. I left the cap off on my test strips one night which is a big no-no! This contaminated the whole container of 25 very expensive test strips, the same ones I used last week with all the number spikes. I also did not know I had to wash my hands every time prior to blood testing. Hand sanitizer and lotion on my hands can impact the test scores I get too. It’s all been trial and error so far and I have learned so much. This weeks numbers are much better so far thanks to the adjustment to my diet and all the new blood testing education I received last Friday from a Diabetic RN. Later this week I meet with a Diabetic RD for more education on diet.
Dan and I had our second visit with SD Hospice last Thursday to start developing our birth plan. We got through the first part of the birth plan fairly easily (who we want in the delivery room, non-continuous fetal heart monitoring, natural labor with no drugs)… but then had a really hard time what to specify after Samuel’s birth because there are still so many variables. I know so well from my last experience with having Luke that everything can change in the blink of an eye. Our last birth plan basically went right out the window when we discovered Luke had some complications a couple hours after his birth that needed tending to immediately. (he had an infection in his blood and just needed more hydration and antibiotics for ~28 hours then was fine to take home)
Our Hospice support team has been so incredible. They offer up so much information and resources we never considered. For instance, we originally planned to go on a public tour of the hospital this week so we can get a feel for the hospital layout, see the delivery and post-partum rooms, ask questions, etc. Hospice recommended to us and is now working with Mary Birch to set up our own private tour. This will give us the ability to ask specific questions to our situation, questions we wouldn’t have been comfortable asking on a public tour. We also consented for Hospice to work with ‘Now I Lay Me Down to Sleep’ foundation which is an organization that will come out and do free photography of our Samuel after he is born. See their work on You Tube: http://www.youtube.com/watch?v=-QJF0Cs4f9s This is a very emotional slide show but so beautifully done. I can’t watch it without completely losing it still.
Dan and I had our second visit with SD Hospice last Thursday to start developing our birth plan. We got through the first part of the birth plan fairly easily (who we want in the delivery room, non-continuous fetal heart monitoring, natural labor with no drugs)… but then had a really hard time what to specify after Samuel’s birth because there are still so many variables. I know so well from my last experience with having Luke that everything can change in the blink of an eye. Our last birth plan basically went right out the window when we discovered Luke had some complications a couple hours after his birth that needed tending to immediately. (he had an infection in his blood and just needed more hydration and antibiotics for ~28 hours then was fine to take home)
Our Hospice support team has been so incredible. They offer up so much information and resources we never considered. For instance, we originally planned to go on a public tour of the hospital this week so we can get a feel for the hospital layout, see the delivery and post-partum rooms, ask questions, etc. Hospice recommended to us and is now working with Mary Birch to set up our own private tour. This will give us the ability to ask specific questions to our situation, questions we wouldn’t have been comfortable asking on a public tour. We also consented for Hospice to work with ‘Now I Lay Me Down to Sleep’ foundation which is an organization that will come out and do free photography of our Samuel after he is born. See their work on You Tube: http://www.youtube.com/watch?v=-QJF0Cs4f9s This is a very emotional slide show but so beautifully done. I can’t watch it without completely losing it still.
Wednesday, December 2, 2009
New Routines - Week 30
On Monday, my OB confirmed I tested positive for gestational diabetes. I didn't have this condition with my first pregnancy so this was a big shock to me! But now thinking back last month, I don't think my gestational health stood a chance. I had unhealthy eating habits due to 4 back-to-back November birthdays in my immediate family, Halloween candy is still in great supply at our house, and of course Thanksgiving to top it all off. I know… excuses, excuses, right? I should have been smarter. Now I am paying the price and must greatly change my diet for the remainder of my pregnancy... monitor all my food intake and do a finger pricking test daily to ensure my blood sugar levels stay low. I am sure I will be just fine and am ready to take on these new challenges. :)
Additionally during my OB visit on Monday, my doc asked how my kick counting was going. I told her I haven’t really done this yet and believe that Samuel’s kicks are still so light and erratic that it would be hard to know if there is something wrong. She replied back, “you absolutely need to start and if you don’t see 10 kicks in a 1 hour (active) period, I need to go to the Mary Birch Triage center immediately to get my baby checked out.” I left that visit feeling a bit frustrated and thought to myself… I guess I will be going to that Triage a lot for a bunch of false alarms.
I started counting kicks that same night (Monday). This was probably the first time I paid special attention to them and actually made myself sit down after dinner (or) while I did Luke’s bath and consciously counted Samuel’s kicks. To my surprise, the 10 kicks/moves/rolls are there for the past 2 days and even before the hour was up! When I compare this to my last pregnancy- yes, Samuel is a little less active than Luke, but he’s still there fighting so hard to remind me he is still OK! I also didn’t have to keep up with a VERY active 2 year old when I had to count kicks with Luke in my tummy. I do feel so much more relieved now that all is how it should be at least at the present time.
Additionally during my OB visit on Monday, my doc asked how my kick counting was going. I told her I haven’t really done this yet and believe that Samuel’s kicks are still so light and erratic that it would be hard to know if there is something wrong. She replied back, “you absolutely need to start and if you don’t see 10 kicks in a 1 hour (active) period, I need to go to the Mary Birch Triage center immediately to get my baby checked out.” I left that visit feeling a bit frustrated and thought to myself… I guess I will be going to that Triage a lot for a bunch of false alarms.
I started counting kicks that same night (Monday). This was probably the first time I paid special attention to them and actually made myself sit down after dinner (or) while I did Luke’s bath and consciously counted Samuel’s kicks. To my surprise, the 10 kicks/moves/rolls are there for the past 2 days and even before the hour was up! When I compare this to my last pregnancy- yes, Samuel is a little less active than Luke, but he’s still there fighting so hard to remind me he is still OK! I also didn’t have to keep up with a VERY active 2 year old when I had to count kicks with Luke in my tummy. I do feel so much more relieved now that all is how it should be at least at the present time.
Saturday, November 21, 2009
Blessed with New Support
Some great things happened to us this week and we couldn’t be more thankful. God has been good to us with giving us just what we need at the right time and not a minute too soon!
I met with our new OB/Perinatologist at Sharp Mary Birch earlier this week, the doctor who will deliver our beautiful Samuel. She is considered a high risk doctor and has dealt with many other cases like ours. The entire 2 hour office visit was so efficient, yet comfortable. First, I had another ultrasound done to establish a baseline for Samuel’s conditions at this doctor’s office. This sonographer was just as amazing as the one at Scripps and talked me through all the screen captures… although I am now starting to feel like an expert ‘ultrasound viewer’ in my own right due to all the ultrasounds we have had done in the past 11 weeks. She handed me pictures of Samuel at the end and I hadn’t even asked for them! I quickly was moved into another room where a nurse practitioner examined me. My new OB came in immediately after. Her tone was so warm and comforting. I felt like she was a mother figure in some weird way. She explained how our follow-up visits will go for the remainder of my pregnancy and discussed the possibility for induction when I am full term to guarantee she would be the delivering OB.
Yesterday we met with a San Diego Children’s Hospice Team consisting of a Social Worker, a Spiritual Counselor and a Nurse. These three women have been specifically assigned to our family to provide aid during the remaining term of the pregnancy, the birth itself and post-term (for as long as we have with little Samuel). We have the option to use them as much or as little as we need them for things like: creating a birth plan and ensuring it is upheld, facilitating communications with the hospital, obtaining any resources we need, and providing quality and comfort care to our son either at an in-patient care facility (like a nice hotel with 24/7 medical care) -or- directly at our home if Samuel is more stabilized. During the 1 hour visit, each one spoke with great compassion addressing their role in the process. We also found out they are all believers in the faith! We prayed together at the end of the visit and will be seeing them again in a few weeks.
Here are some of the latest ultrasound pictures captured of our sweet Samuel:
Umbilical cord in front of Samuel's face
Profile
Hand in front of Samuel's face
I met with our new OB/Perinatologist at Sharp Mary Birch earlier this week, the doctor who will deliver our beautiful Samuel. She is considered a high risk doctor and has dealt with many other cases like ours. The entire 2 hour office visit was so efficient, yet comfortable. First, I had another ultrasound done to establish a baseline for Samuel’s conditions at this doctor’s office. This sonographer was just as amazing as the one at Scripps and talked me through all the screen captures… although I am now starting to feel like an expert ‘ultrasound viewer’ in my own right due to all the ultrasounds we have had done in the past 11 weeks. She handed me pictures of Samuel at the end and I hadn’t even asked for them! I quickly was moved into another room where a nurse practitioner examined me. My new OB came in immediately after. Her tone was so warm and comforting. I felt like she was a mother figure in some weird way. She explained how our follow-up visits will go for the remainder of my pregnancy and discussed the possibility for induction when I am full term to guarantee she would be the delivering OB.
Yesterday we met with a San Diego Children’s Hospice Team consisting of a Social Worker, a Spiritual Counselor and a Nurse. These three women have been specifically assigned to our family to provide aid during the remaining term of the pregnancy, the birth itself and post-term (for as long as we have with little Samuel). We have the option to use them as much or as little as we need them for things like: creating a birth plan and ensuring it is upheld, facilitating communications with the hospital, obtaining any resources we need, and providing quality and comfort care to our son either at an in-patient care facility (like a nice hotel with 24/7 medical care) -or- directly at our home if Samuel is more stabilized. During the 1 hour visit, each one spoke with great compassion addressing their role in the process. We also found out they are all believers in the faith! We prayed together at the end of the visit and will be seeing them again in a few weeks.
Here are some of the latest ultrasound pictures captured of our sweet Samuel:
Umbilical cord in front of Samuel's face
Profile
Hand in front of Samuel's face
Thursday, November 12, 2009
Heart Defect Confirmed
We are now 27 weeks along in the pregnancy. We met with the sonographer and a pediatric cardiologist this week. They looked at Samuel’s heart in great depth and listened to the heart’s sound waves. They ruled out ASD or VSD pretty quickly which is one of the more common heart defects in Trisomy13/18. ASD or VSD was suggested by our last perinatologist but it was never concluded. Something different was discovered and is considered only a minor heart defect. The right side of the heart is more ‘generous’ than the left side. On this larger right side, there is a tricuspid valve prolapse -or- in laymen’s terms, there is a regurgitation of blood from the lower chamber back into the upper chamber. The blood is supposed to be pushed down and stay down, but this is not happening. There is no way of knowing at this point if this heart defect could be of any real danger to him. Additional examination will be needed after he is born.
We have our first appointment at Sharp Mary Birch next week. I am looking forward to meeting our new OB who will deliver little Samuel.
Also, we have a new picture to share! Our other son turned 2 years old this week and during the photography shoot we asked to have some pregnancy photos done. Here is our favorite!
We have our first appointment at Sharp Mary Birch next week. I am looking forward to meeting our new OB who will deliver little Samuel.
Also, we have a new picture to share! Our other son turned 2 years old this week and during the photography shoot we asked to have some pregnancy photos done. Here is our favorite!
Thursday, November 5, 2009
Plans Are Beginning to Take Shape
I am happy to report that this week’s doctor’s visits were both very positive!
We went to our 26-week ultrasound on Tuesday. The sonographer talked us through the entire scan, unlike my last two ultrasound visits at UCSD.
My two largest concerns I addressed with her were: 1) low amniotic fluid 2) growth of the cyst found on the umbilical cord. She educated me that the amniotic fluid was perfectly normal and the cyst growth is still inconclusive while we still do not know if there is any real danger to Samuel yet. Even though the cyst is quite large (8cm x 5cm in one angle), there are more things to consider such as number of cysts within the cyst and exact angle the baseline cyst measurements were taken at UCSD. Two new things that were discovered 1) a possible absence of a stomach 2) a possible a greater complication to the heart than what was reported at UCSD.
She is recommending a follow-up visit at the UCSD Hilcrest facility where we will now finally perform a fetal cardio echo exam to check Samuel’s heart. She works at this facility too and will do the evaluation for us next week!
The sonographer took great interest and compassion to our situation. We asked for one picture of Samuel and she printed ten! We discussed with her the possible ‘scenarios’ that could take place at Samuel’s birth and our feelings about when we would want to take corrective action to fix our precious Samuel and when we would not. We also told her we would like to deliver at a hospital that is capable to medically care for our son if we chose to take this route at the time of his birth. We do NOT want to be in a position to have to transport our son to another hospital while I am still recovering myself.
The following day we had a general check-up with my OB. I prepared myself to go over these ‘scenarios’ and build my case for the hospital I would like to deliver. Recap- at my last OB visit, she stated that she wanted me to deliver at Scripps which doesn’t have the neonatal staff or surgeons to care for a baby like little Samuel. When she finally came into the room to perform our standard biweekly check-up, she immediately gave me a big hug and told me I was so brave. To my surprise, she started the discussion stating “I am going to recommend you deliver at a different hospital because of the nature of your son’s complications”. What?? I didn’t have to say anything or plea my case to her. Before I knew it she was writing the name of a perinatologist/OB referral over at Mary Birch Sharp hospital and handed me the order for the cardio echo exam to take place next week. This cardio exam couldn’t be done without her blessing. Had the sonographer talked to my OB about our feelings on both of these things? I may never know…
We are so happy that things are starting to come together for us regarding at least a few of these really big and difficult decisions. Thank you to all who are following our blog and praying for us! Your prayers are already paying off greatly and we are feeling much stronger now with what lies ahead of us.
We went to our 26-week ultrasound on Tuesday. The sonographer talked us through the entire scan, unlike my last two ultrasound visits at UCSD.
My two largest concerns I addressed with her were: 1) low amniotic fluid 2) growth of the cyst found on the umbilical cord. She educated me that the amniotic fluid was perfectly normal and the cyst growth is still inconclusive while we still do not know if there is any real danger to Samuel yet. Even though the cyst is quite large (8cm x 5cm in one angle), there are more things to consider such as number of cysts within the cyst and exact angle the baseline cyst measurements were taken at UCSD. Two new things that were discovered 1) a possible absence of a stomach 2) a possible a greater complication to the heart than what was reported at UCSD.
She is recommending a follow-up visit at the UCSD Hilcrest facility where we will now finally perform a fetal cardio echo exam to check Samuel’s heart. She works at this facility too and will do the evaluation for us next week!
The sonographer took great interest and compassion to our situation. We asked for one picture of Samuel and she printed ten! We discussed with her the possible ‘scenarios’ that could take place at Samuel’s birth and our feelings about when we would want to take corrective action to fix our precious Samuel and when we would not. We also told her we would like to deliver at a hospital that is capable to medically care for our son if we chose to take this route at the time of his birth. We do NOT want to be in a position to have to transport our son to another hospital while I am still recovering myself.
The following day we had a general check-up with my OB. I prepared myself to go over these ‘scenarios’ and build my case for the hospital I would like to deliver. Recap- at my last OB visit, she stated that she wanted me to deliver at Scripps which doesn’t have the neonatal staff or surgeons to care for a baby like little Samuel. When she finally came into the room to perform our standard biweekly check-up, she immediately gave me a big hug and told me I was so brave. To my surprise, she started the discussion stating “I am going to recommend you deliver at a different hospital because of the nature of your son’s complications”. What?? I didn’t have to say anything or plea my case to her. Before I knew it she was writing the name of a perinatologist/OB referral over at Mary Birch Sharp hospital and handed me the order for the cardio echo exam to take place next week. This cardio exam couldn’t be done without her blessing. Had the sonographer talked to my OB about our feelings on both of these things? I may never know…
We are so happy that things are starting to come together for us regarding at least a few of these really big and difficult decisions. Thank you to all who are following our blog and praying for us! Your prayers are already paying off greatly and we are feeling much stronger now with what lies ahead of us.
Saturday, October 24, 2009
Viability
I consider this week a major milestone for little Samuel. It is week 24 and is the first week in the pregnancy for “viability” as my OB points out, meaning it is the earliest recorded week a baby can be born and actually live outside the womb! Of course, this possibility more than likely applies to normal, healthy babies. It is still reassuring to know this fact just in case I was to go into preterm labor at any point.
I also believe because of this “viability” factor, it is probably the same reason why most states will not allow abortions after week 24. I didn’t know this time table until recently (week 18 when Samuel was diagnosed). The doctors have made Dan and I very much aware, and several times. Initially, we felt they were pushing us in that direction, but the moment we took the firm stance and said there is no possibility, they all eased up. My OB has even asked me if I chose a name. When I told her it was Samuel she said it she loved it and it was absolutely perfect. She has referred to him on several occasions as my “dear sweet boy”. I sense she does have compassion in her heart for our situation and I do feel much more comfortable now talking to her.
Dan and I decided our next steps are to determine the hospital we will deliver. We have a set of questions and scenarios we want to run by our OB then make the decision. We also want to speak to a neonatologist about some of Samuel’s complications, namely the major one so far found- his meningomyelocele or neural tube defect located around his sacrum / lower portion of his spinal cord.
On a separate and happy note, Dan was finally able to feel Samuel kick for the first time! It took place sometime last week. He was so happy to finally have the opportunity to feel our baby’s movements. The frequency of little Samuel’s movements have been still erratic and a lot of them are still very soft. But I have no doubt that as he grows bigger, his dad will have many more opportunities!
I also believe because of this “viability” factor, it is probably the same reason why most states will not allow abortions after week 24. I didn’t know this time table until recently (week 18 when Samuel was diagnosed). The doctors have made Dan and I very much aware, and several times. Initially, we felt they were pushing us in that direction, but the moment we took the firm stance and said there is no possibility, they all eased up. My OB has even asked me if I chose a name. When I told her it was Samuel she said it she loved it and it was absolutely perfect. She has referred to him on several occasions as my “dear sweet boy”. I sense she does have compassion in her heart for our situation and I do feel much more comfortable now talking to her.
Dan and I decided our next steps are to determine the hospital we will deliver. We have a set of questions and scenarios we want to run by our OB then make the decision. We also want to speak to a neonatologist about some of Samuel’s complications, namely the major one so far found- his meningomyelocele or neural tube defect located around his sacrum / lower portion of his spinal cord.
On a separate and happy note, Dan was finally able to feel Samuel kick for the first time! It took place sometime last week. He was so happy to finally have the opportunity to feel our baby’s movements. The frequency of little Samuel’s movements have been still erratic and a lot of them are still very soft. But I have no doubt that as he grows bigger, his dad will have many more opportunities!
Wednesday, October 14, 2009
Struggling with Upcoming Decisions
Today I have been given even more information to consider, some from my OB and some from a Christian lady (friend of a friend) who had a baby with Trisomy 13 almost 10 years ago who lives right here in San Diego.
At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.
Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.
At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.
Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.
Wednesday, October 7, 2009
22-Week Ultrasound Follow-up
Today we had another ultrasound with the UCSD Genetic Specialist so we could check the status of Samuel's internal organs. It took about 45 minutes and this visit was definitely not as uncomfortable as the last one. Both Dan and I were much more at ease now that we have digested the information of his condition over the past 4 weeks, but there is still not a day that goes by that we don’t hope and pray for some tiny, perfect miracle to transpire that can fix our little boy. Today’s findings in the ultrasound were similar to what was found 4 weeks ago. His heart is still strong but there may be an AV canal defect or a hole in his heart (still not conclusive), his kidneys and bladder are still enlarged and his neural tube defect is still pretty extreme but not life threatening. Samuel seems to have stabilized for the most part but his growth seems to be slowing. 4 weeks ago he was about 2 weeks smaller than his real gestational age. Today, he is almost 3 weeks smaller then his real gestational age. They determine this by taking measurements of the cranium, humerus and femur. From my research, this is pretty common for Trisomy 13 babies.
The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.
Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.
Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.
The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.
Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.
Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.
Wednesday, September 23, 2009
Ultrasound Pictures of Our Little Samuel
Samuel is, without question, such a big part of our family. We now talk about him every day and are growing to love him more and more for every moment we have with him. I savor every little flutter I feel in my belly. He is not active enough to start feeling strong kicks outside of my belly which is still unfortunate for his dad.
Last Thursday’s OB check-up went well. Samuel’s heart was beating 160bpm! He is so strong and such a good little fighter. He reminds me a lot of his big brother Luke and I bet has a strong temperament too. :)
We requested to have Samuel’s pictures sent to us from his 18wk ultrasound appointment. Because that day was so very hard for us, we neglected to ask for these images at the time. A few days later we realized we DID want them and thought it might be too late to still get them. We want to treasure every little piece of his existence for as long as we have with him. The counselor at the UCSD Medical Center got back to me and told me he would locate Samuel’s images after checking a few different databases. I didn’t hear back for a few days and finally last Saturday they came in the mail. We were thrilled! After reviewing the images again, he is every bit as perfect just as we remember when we saw him on the ultrasound scan live. Here are a couple of snapshots taken of our little angel:
Samuel's Profile
Samuel's Ankle
Additionally, last night we finally scanned the 12 week ultrasound image that was taken at my normal OB office ~8 weeks ago. This was the week the doctor discovered the ‘prominent’ bladder. You can vaguely see the dark spot in the lower portion of his body (far right side). I would never have guessed it was slightly enlarged until the doctor pointed it out.
Last Thursday’s OB check-up went well. Samuel’s heart was beating 160bpm! He is so strong and such a good little fighter. He reminds me a lot of his big brother Luke and I bet has a strong temperament too. :)
We requested to have Samuel’s pictures sent to us from his 18wk ultrasound appointment. Because that day was so very hard for us, we neglected to ask for these images at the time. A few days later we realized we DID want them and thought it might be too late to still get them. We want to treasure every little piece of his existence for as long as we have with him. The counselor at the UCSD Medical Center got back to me and told me he would locate Samuel’s images after checking a few different databases. I didn’t hear back for a few days and finally last Saturday they came in the mail. We were thrilled! After reviewing the images again, he is every bit as perfect just as we remember when we saw him on the ultrasound scan live. Here are a couple of snapshots taken of our little angel:
Samuel's Profile
Samuel's Ankle
Additionally, last night we finally scanned the 12 week ultrasound image that was taken at my normal OB office ~8 weeks ago. This was the week the doctor discovered the ‘prominent’ bladder. You can vaguely see the dark spot in the lower portion of his body (far right side). I would never have guessed it was slightly enlarged until the doctor pointed it out.
Wednesday, September 16, 2009
Results Confirmed
The amnio results came back this afternoon. (deep sigh) Samuel has full trisomy 13, not partial, not mosaic, not due to a translocation. This is the most severe form of Trisomy 13 as every cell in his little body has a third copy of the 13th chromosome. I felt almost robotic with my line of questioning and responses, writing down all key words that were handed to me over the phone so I wouldn’t forget any of the details when I called my husband after. The counselor even commented to me, ‘you seem like you are doing OK hearing this news’. My response to him- I feel like I’ve been preparing myself since the discovery of the enlarged fetal bladder in week 12. The perinatal specialist gave me a hand out in week 13 with statistics showing probabilities of chromosomal abnormalities with this type of thing found with the bladder. Also, my faith in God has been the primary reason to get me through this with some type of sanity. I know God has his reasons for giving me little Samuel with these types of complications and He will also have the sole decision when to take him home. The counselor said a lot of His faith-following patients respond in a similar way and he seemed satisfied with my answer.
I hung up the phone and I was back in my fog, the same way I felt last Tuesday after the very grim ultrasound results. I left work today seeing things around me but no real details. I just didn’t care. My body was numb, my thoughts consumed about little Samuel whether he is having any discomfort, does he feel his organs not functioning properly, can he sense his parents are deeply saddened by his prognosis to live.
I hung up the phone and I was back in my fog, the same way I felt last Tuesday after the very grim ultrasound results. I left work today seeing things around me but no real details. I just didn’t care. My body was numb, my thoughts consumed about little Samuel whether he is having any discomfort, does he feel his organs not functioning properly, can he sense his parents are deeply saddened by his prognosis to live.
Saturday, September 12, 2009
Initial Discovery of Pregnancy Issue
History
For those that don’t know us, our names our Josi and Dan. We live in San Diego, CA and were married in April 2005. We have one healthy beautiful son named Luke who is almost 2. He has a little
spit fire personality and is a highly energetic little kid. He has simply been the light of our life. Then we found out in May 2009 I was pregnant again and our light continued to brighten! We couldn’t believe it because we just started trying to expand our family that very same month. My gosh! ‘Ask, and you shall receive’ comes to mind. I am now currently 19 weeks along in the pregnancy with our second child, “Samuel”. We chose this name because it means “Heard by God” and we felt like he definitely heard our request to have another child and answered so quickly. Samuel’s due date is February 7, 2010.
Samuel's ultrasound picture at 8 weeks gestation
9/12/09
On Tuesday, September 8, 2007, we had an ultrasound scheduled to get a better glimpse at our little Samuel since our last scan was done at 12 weeks gestation and he was so small. There was a little concern going to this doctors visit because of two reasons: 1) The baby had an abnormal or 'prominent' bladder which was discovered at week 12. However, we were told that the baby’s bladder had a 90% chance of correcting itself. The alternative could be a urinary obstruction or potentially something worse. 2) At week 17, we received positive AFP result found in the second trimester blood work screening. The AFP result was 4.05 and results for normal babies should fall below 2.5. The doctor reassured us that positive results are not indicative there is a problem with the baby and in fact, many times false-positive readings occur and babies end up being perfectly healthy. Regardless of this hopeful prospect, she referred us to UCSD Medical Center / Genetic Specialist to perform further evaluation on our baby. The sonographer spent ~1 hour conducting our ultrasound. We were told ahead of time by a genetic counselor we would not be allowed to ask questions until a doctor reviewed our images and came to our room after the ultrasound was complete. During the hour, it became unsettling. The sonographer did not say much of anything or indicate what part of the body we were looking at the entire time I was on the table. It was unlike any of our past ultrasounds performed at our normal OBGYN office. No pictures to take home, no warm fuzzies when the baby moved around. Once the evaluation was done, the sonographer left the room to speak to the doctor about the findings. The next 10 minutes were pure agony. The doctor finally came in with two other doctors in training. Our hearts sank. Why would our baby require so much attention? The doctor did not waste any time and immediately started reviewing her findings with us from the ultrasound scan. Her first words were “Your baby has many abnormalities that we are very concerned about”. She went through each of these abnormalities one after another which initially put us at a loss for words. The logic side of me or possibly the pure shock of this news kept me together at first so I was able to muster up a few questions asking about the severity of each one of these anomalies and if they could be related to some primary cause. The doctor stated she definitely believed there was a single source.
Samuel was diagnosed with a severe chromosomal abnormality (either Trisomy 13 or 18) at 18 weeks gestation. The doctor recommended an immediate amnio to confirm her findings. We accepted her recommendation and the procedure was done very quickly. We also had an ‘early look’ FISH analysis performed which took a portion of the amniotic fluid extracted from the procedure. The FISH findings came back 3 days later and concluded the baby does indeed have Trisomy 13. The amnio results are due back sometime next week and will very likely confirm the same results. We can then find out if it is a result of partial Trisomy 13 (not as severe) or full Trisomy 13 (most common of all Trisomy 13 cases).
Trisomy 13 Background
Based on my readings and information supplied by our genetic counselor, I can provide a little background on the disorder for those who have questions on how this could have happened and what it means for our son. Trisomy 13 is also known as Patau Syndrome. It occurs in the first few days after conception and is completely a random event. The baby will inherit 23 chromosomes from each parent for a total of 46 chromosomes resulting in a normal healthy baby. But sometimes, a mutation occurs during the cell division process, resulting in a third copy of one of the chromosomes. This third copy is called a "trisomy". The most common case of a trisomy occurrence is Down’s Syndrome (Trisomy 21), which has three copies of the 21st chromosome. The other two that are not as common and can be much more life threatening are Patau Syndrome (Trisomy 13) and Edwards Syndrome (Trisomy 18). Trisomy 13 and 18 both cause serious physical and mental abnormalities in a child and the majority of them do not make it to full term in the pregnancy. If they do, the child generally has hours or days before he/she passes, but 5-10% of live births actually do make it past their first birthday.
How We Are Managing
Working through this news has been the hardest emotional challenge my husband and I have ever had to face. Just a few days ago we were preparing for a new little life to care for, and now after this news, we must prepare ourselves for a very probable death. Our emotions have been accompanied by anger, fear and a great deal of sadness. However, we have no doubt that God is at work and weaving his perfect and intricate plan for this child and us. It has been a struggle to completely understand this but every day begins a new day... a new day of hope that His will be done... a new day of relief that we can trust Him to get us through this excruciatingly hard time.... a new day of peace that He can continue to provide us comfort and reassurance that everything will be OK.
We are also holding on to hope that our child will be born alive and placed into our arms so that we can have the amazing opportunity to meet and tell him how much we love him.
For those that don’t know us, our names our Josi and Dan. We live in San Diego, CA and were married in April 2005. We have one healthy beautiful son named Luke who is almost 2. He has a little
spit fire personality and is a highly energetic little kid. He has simply been the light of our life. Then we found out in May 2009 I was pregnant again and our light continued to brighten! We couldn’t believe it because we just started trying to expand our family that very same month. My gosh! ‘Ask, and you shall receive’ comes to mind. I am now currently 19 weeks along in the pregnancy with our second child, “Samuel”. We chose this name because it means “Heard by God” and we felt like he definitely heard our request to have another child and answered so quickly. Samuel’s due date is February 7, 2010.
Samuel's ultrasound picture at 8 weeks gestation
9/12/09
On Tuesday, September 8, 2007, we had an ultrasound scheduled to get a better glimpse at our little Samuel since our last scan was done at 12 weeks gestation and he was so small. There was a little concern going to this doctors visit because of two reasons: 1) The baby had an abnormal or 'prominent' bladder which was discovered at week 12. However, we were told that the baby’s bladder had a 90% chance of correcting itself. The alternative could be a urinary obstruction or potentially something worse. 2) At week 17, we received positive AFP result found in the second trimester blood work screening. The AFP result was 4.05 and results for normal babies should fall below 2.5. The doctor reassured us that positive results are not indicative there is a problem with the baby and in fact, many times false-positive readings occur and babies end up being perfectly healthy. Regardless of this hopeful prospect, she referred us to UCSD Medical Center / Genetic Specialist to perform further evaluation on our baby. The sonographer spent ~1 hour conducting our ultrasound. We were told ahead of time by a genetic counselor we would not be allowed to ask questions until a doctor reviewed our images and came to our room after the ultrasound was complete. During the hour, it became unsettling. The sonographer did not say much of anything or indicate what part of the body we were looking at the entire time I was on the table. It was unlike any of our past ultrasounds performed at our normal OBGYN office. No pictures to take home, no warm fuzzies when the baby moved around. Once the evaluation was done, the sonographer left the room to speak to the doctor about the findings. The next 10 minutes were pure agony. The doctor finally came in with two other doctors in training. Our hearts sank. Why would our baby require so much attention? The doctor did not waste any time and immediately started reviewing her findings with us from the ultrasound scan. Her first words were “Your baby has many abnormalities that we are very concerned about”. She went through each of these abnormalities one after another which initially put us at a loss for words. The logic side of me or possibly the pure shock of this news kept me together at first so I was able to muster up a few questions asking about the severity of each one of these anomalies and if they could be related to some primary cause. The doctor stated she definitely believed there was a single source.
Samuel was diagnosed with a severe chromosomal abnormality (either Trisomy 13 or 18) at 18 weeks gestation. The doctor recommended an immediate amnio to confirm her findings. We accepted her recommendation and the procedure was done very quickly. We also had an ‘early look’ FISH analysis performed which took a portion of the amniotic fluid extracted from the procedure. The FISH findings came back 3 days later and concluded the baby does indeed have Trisomy 13. The amnio results are due back sometime next week and will very likely confirm the same results. We can then find out if it is a result of partial Trisomy 13 (not as severe) or full Trisomy 13 (most common of all Trisomy 13 cases).
Trisomy 13 Background
Based on my readings and information supplied by our genetic counselor, I can provide a little background on the disorder for those who have questions on how this could have happened and what it means for our son. Trisomy 13 is also known as Patau Syndrome. It occurs in the first few days after conception and is completely a random event. The baby will inherit 23 chromosomes from each parent for a total of 46 chromosomes resulting in a normal healthy baby. But sometimes, a mutation occurs during the cell division process, resulting in a third copy of one of the chromosomes. This third copy is called a "trisomy". The most common case of a trisomy occurrence is Down’s Syndrome (Trisomy 21), which has three copies of the 21st chromosome. The other two that are not as common and can be much more life threatening are Patau Syndrome (Trisomy 13) and Edwards Syndrome (Trisomy 18). Trisomy 13 and 18 both cause serious physical and mental abnormalities in a child and the majority of them do not make it to full term in the pregnancy. If they do, the child generally has hours or days before he/she passes, but 5-10% of live births actually do make it past their first birthday.
How We Are Managing
Working through this news has been the hardest emotional challenge my husband and I have ever had to face. Just a few days ago we were preparing for a new little life to care for, and now after this news, we must prepare ourselves for a very probable death. Our emotions have been accompanied by anger, fear and a great deal of sadness. However, we have no doubt that God is at work and weaving his perfect and intricate plan for this child and us. It has been a struggle to completely understand this but every day begins a new day... a new day of hope that His will be done... a new day of relief that we can trust Him to get us through this excruciatingly hard time.... a new day of peace that He can continue to provide us comfort and reassurance that everything will be OK.
We are also holding on to hope that our child will be born alive and placed into our arms so that we can have the amazing opportunity to meet and tell him how much we love him.
Subscribe to:
Comments (Atom)
